Topics of interests
in care for kidney patients
My goal is to improve the quality of care for chronic kidney patients. To enhance healthcare access for patients with chronic diseases, especially kidney patients, I focus my efforts on specific topics. These topics describe issues that interfere with the quality of life. Making a difference is worthwhile.
Access to medication & shortage of medication
A challenge of today’s care is the shortage and costs of medication. I face these challenges as a patient. I choose to share what consequences the medicine shortage has on my daily life. Next to sharing my patient’s perspective, I’m also actively involved in fighting the medicine shortage. I cooperate as a patient representative with patient organizations like NVN , Patients’ Federation Netherlands, and Samenwerking Infectieziekten burgerpanel.
Blogs/Media
Geen bericht is niet altijd goed bericht
Medicijnen: van levensbelang
Medicijnen nodig? De zorg draait meer om geld dan om mensen- PowNed
Patientenfederatie.nl/medicijntekorten-raken-patienten-hard
Mijn donornier maakt mij extra kwetsbaar voor infectieziekten.
Safety of medicine during pregnancy
Every child is a miracle. Wishing to have children while dealing with a medical condition can be complicated. If you have an illness or have had an operation, it is not self-obvious to have children. Always see your doctor if you need to take medication. Make sure that it is safe to have a baby for both you and your baby. As a patient expert, I was involved in several projects. I helped create a guideline, for example. This guideline focuses on the best care for kidney patients who wish to have a baby.
I was also involved in efforts to improve digital care. Another focus is to enhance data exchange during the planning stage for a baby. This initiative also includes improving data exchange during the phases of pregnancy and maternity care.
Nierstichting. nl/kinderwens en zwangerschap
VIPP Babyconnect
Een Persoonlijke Gezondsheidsomgeving voor zwangeren
To prevent serious side effects
Next to the quantity of life, which means survival of the disease or illness, medical technology has been crucial. Techniques like dialysis and transplants have brought us this far. Nowadays, more patients can live a relatively normal life. Nevertheless, drugs like immunosuppressives can have adverse effects. These effects can make life difficult. They can even endanger one’s quality of life. What are we going to do? There is no simple answer to this question.
Life Quality
I’m hoping for the latest advancements in medical treatment: precision and personalized medicine. How wonderful would it be if one person could make a difference?
‘A researcher who creates a prednisolone option without serious side effects would become a millionaire!‘
Working together on a national and international level
To empower patients by sharing knowledge, experience, and skills.
As a member of the Advisory Board Medicine at NVN The Dutch Kidney Association, I had the chance to work together with experts of different fields of research in cystinosis, aHUS, and so on. The PAR Medicine helped pave the way to joining forces with stakeholders in medical research and development on a national and international level.
Exercise & organ transplant
In 2026 I will join Transfit to support Walk & Talk initiatives and the European Transplant Games.
More information www.Transfit.nl
Testimonials
Are free, reas my blogs for a start &.
Get in touch for:
caretobear.link 